Why professional reluctant to diagnose PSP?

[secrtary]

Hi. New to this site. Husband eventually diagnosed with Alzheimers two years ago (NHS said was depression, but after privately funded PET scan and privately funded psychiatrist who was brilliant) was told it was Alzheimers within 10 minutes - therefore lost 5 months worth of treatment, which is annoying. NHS psychiatrist referred to NHS neurologist who told us in the consultation that husband has PSP. Never heard of it before so looked it up and, hay presto, symptoms match exactly. BUT neurologist wrote her report to our GP and just said he had dementia. WHY, why why? Husband recently been in hospital and no-body took any notice when told he had query PSP because not in the records. Looks like we are going back down the private route again. Alarming how symptoms are getting worse very quickly. Now almost bed-ridden because of stiffness of limbs. I am doing my very best but feel so sad for him because it seems his "dementia" has slowed down but the physical aspects are getting much worse. Thus he is very aware of what he is like and is very upset that his body isn't working. He was a fit professional footballer.

[Kevin_1]

Hello Secrtary

Welcome to the site.

I'm sorry you have had such a shoddy do. PSP is hard enough without that.

Before you abandon the NHS here are a couple of things you might consider.

First off the NHS is organised in tiers. If you saw a neurologist at your local hospital that is tier 2. Your GP is tier one. As needs or diagnosis gets more complex then the patient should be pushed up a level to someone who is more specialised. In your shoes I would ask the GP for a referral to a neurologist specialising in PSP.

It's all about getting practical support in place early too. Things you might consider:

A telephone call to Social Services for an Occupational Health Assessment of his needs and what might help him around the home.

There are a lot of resources out there, but as you have found it is often necessary to fight for them somewhat.

Exercise is important. It does not have to be aggressive. However it does preserve movement and the ability to keep functioning longer.

The PSP Assoc. has a good website with a lot of helpful information. They also have a very good helpline. Finally you might have a PSP Assoc. representative in your area and they can sometimes do home visits, explain things to you and point out useful resources in your area.

I do hope this helps a little.

And, I hope things get a little easier in terms of support.

Best to you both

Kevin

[Kevin_1 in reply to Kevin_1]

Oh, adding.

I expect they are not reluctant excepting that it is a very serious illness which is difficult to diagnose and they are trying not to get it wrong. A tertiary neurologist in a specialist unit have access to a huge array of complex equipment to aid in the diagnosis and even then it is only post mortem that they can really be sure.

There is very rapid progress, but big advances are still years away.

You might also like to talk to the PSP Assoc about drug trials and so forth. There may be something available.

P.S. This does not fall into the field of Psychiatry - A neurologist is the specialism for PSP and CBD - I'm surprised the Psychiatrist didn't pass you on to one.

[secrtary in reply to Kevin_1]

Thanks Kevin for your very useful reply. To be fair, since coming out of hospital last week, we are awash with healthcare people at the house. What took four nurses (with the OT looking on/supervising), an hour (wash, dress and move onto re-turn/wheeled chair/re-turn again and then chair in front room), takes me 15 minutes on my own. I do realise however they have to be very risk adverse. Getting a hoist in apparently fixed to the ceiling (if approved). We have the advantage at the moment of six weeks re-enablement package hence all the healthcare professionals at the house, and then we are literally on our own - but as long as I can do it I will and gladly.

Just wanted to spout off a bit I suppose. The condition is so frustrating to deal with both for the ill person and for people who care for him.

[Kevin_1 in reply to secrtary]

Nothing wrong with spouting off.

We all do it here at one time or another.

The whole thing is a weird mixture of hard work, loss, and fighting for what we need to do he caring. Plenty to get angry about.

It's great to hear a hospital is actually doing the re-enablement package stuff.

It's great that they are considering a hoist.

Have you looked at Continuing Health Care?

Are you aware of it?

Are you perhaps getting it now?

Just if you haven't come across it: It's NHS funded care. So it pays for all of the home care you need. It is not means tested unlike Social Services Care. If you want to know more go to beaconchc.co.uk/. Sign up and download their information sheets. Theirs are the best for a balance of detail and readability IMO. You can get plenty of guidance on how to get it here. It really has to be fought for, I'm sorry to say. And, there are quite a few veterans here who will give good tops and guidance.

Wishing you both the best and hoping you will stick around here. It sounds like you are an experienced carer.

Kevin

[LuisRodicioRodicio]

Hi secrtary!

By internal private mail I am sending our experiences with PSP-RS disease after 6 and a half years.

I hope this can be of some help to you.

Hugs

and courage.

Luis

[Motts]

Dear Secrtary - Please do keep in touch with this site. I am new here and everyone shares such helpful information. We are dealing with hard topics and need knowledgeable new friends - our old friends love and support us best they can but really have no clue about the issues we face. Sending Hugs - Granni B

[ninalulu]

that is always the way DRS they don,t want to say nothing only medications that don't do nothing , I went to the neurologist and later the nurse practitioner I have to ask why i fell and she said PSp. nothing else and send me home with a medication that i found later don't do nothing , So i stop taking , know i take some they told me like coconut oil and turmeric cur-cumin i know is not cure , but my husband is an angel , he take care of me , this year we are going on vacation maybe my last one , i going to make a living will and a DNR form , I am waiting for birth certificate from Puerto Rico and after i receive that i go and have everything done , my balance is very bad. THe Dr i saw he never ask for a visit , and i m not planing to see him again. Like you i like to read and i deal with this with my husband, my angel my rock , next year i going to be close to 50 years of weding . sorry about my spelling but my eyes bothered

[patch33]

Hi there,

I watched this a couple of days ago and found it quite enlightening. There are actually a series of videos filmed at the conference, really interesting, haven't finished watching all of them yet but worth it.

youtube.com/watch?v=9lR4tmx...(Not working as expected?)

There are also the videos posted by Teepa Snow on youtube, they help me not to accept but to understand at least.

Hope they help you if you decide to watch them.

kind regards

Dawn

[Beads0122]

Secrtary,

I’m sorry to welcome you here, but you have found an excellent forum with caring and knowledgeable individuals. Many of us have had misdiagnosis before landing on the correct PSP/CBD diagnosis. Unfortunately it appears to me that the rate of decline is greater with this terrible disease than with Alzheimer’s. It also doesn’t rob the patient of memory or awareness of the disease so anxiety and depression are common.

Prayers of help with navigating the medical systems, wisdom, and a slow decline in health coming your way.

Bobby

[raincitygirl]

Hello Secrtary and Welcome

I can't improve on Kevin's excellent and thorough response, but I will mention two things:

An MRI often shows what neurologists call the "hummingbird sign" and that is often considered a sign of PSP.

Our tertiary neurologist had hubby's MRI but wouldn't confirm his (CBD) diagnosis for more than a year, instead saying "possible PSP, or CBD - but won't rule out Alzheimer's: it's an unusual route for AD to take but AD can do that" (he was eventually diagnosed CBD).

I hope the suggestions help give you some orientation: those early days in the disease are confusing!

Anne G.

[SmurfetteVeritas]

I have had similar experience. Diagnosed quite quickly with Parkinsonism-Psp. Excellent neurologist. Then reorganisation of neurological care in trust hit.....

New initiative of Parkinson clinic resulting in a review of cases. A neurologist who admitted knew nothing about PSP, suggested early onset Parkinson, not PSP. Consequences downgraded. Ended up in hospital with severe chest infection, reassessed as.... PSP. In meantime went to Parkinson clinic, all including neurologist and pd, clinic nurse, wondering why I had been sent there as not appropriate treatment and waste of resources.

Almost had apology, so I suspect I was not first, and they are not to blame for their colleagues mistake.

Consequently, I once again have 'Psp' and will return to the care of my original brilliant neurologist despite 'budgets'. I may also ask to be overseen by an Oxford consultant who specialises in Psp, if she agrees. Unfortunately I feel it's the only way to protect dx, and ensure appropriate care.

In conclusion, persevere and do research to argue case when you meet ignorant medical professionals. Expect and prepare. I now take the psp handbook with me to appointments. It helped several times plus educating ones who have treated me. Fight corner by arming yourself with differences between PSP and similar conditions. Educate family/carers so you do not feel isolated.

Another tip which may be appropriate is to sign up to trials. I am part of the OXQUIP study. With the evidence which confirm PSP which is very thorough, it usually makes nhs back down when cost cutting. It's hard and rigourous but it was worth it for me when dx questioned. Depending on your circumstances, could make difference.

Hope it gets sorted out, and don't give up.

[Kevin_1]

Gosh, what an up and down ride!

Do consider asking to be seen by a tertiary neurologist (e.g Oxford in your case). They are more likely not to put you on unnecessary medication and more likely to be able to finesse medication to reduce some of the symptoms.

Lastly it signals 'complexity' to any Continuing Health Care assessment team and that might help secure funding.

Hope this is useful.

Best

Kevin